Signpost

Volume 18, Number 1, October 2013

Journal of Dementia and Mental Health Care of Older People

Editorial

Christina has worked in

Cardiff for twenty five

years and has provided

clinical psychology input

to a number of multi-

disciplinary community

mental health teams for

older people in both

Cardiff and the Vale of Glamorgan. She has

also worked as a tutor on the South Wales

Training Course for Clinical Psychology. Her

current post is with the Practice Development

Unit, which provides support and training for

professionals working with older people with

mental health problems in the Cardiff and Vale

University Local Health Board. Christina is also

the manager for all clinical psychologists

working with older people in the Cardiff area.

She holds the position of Co-Director of the

Dementia Services Development Centre –

Wales. Her particular interests are the

neuropsychology of dementia and developing

services for younger people with dementia.

Welcome to this edition which celebrates 25

years of the production of Signpost. I began

my career as a qualified clinical psychologist

working in Cardiff 26 years ago and thus have

been aware of the journal throughout my

professional life. I have seen the journal

change and grow from its original format

produced on a typewriter and distributed to

colleagues working locally to its current new

format as an e-journal. In this edition we are

fortunate to have a number of contributors to

early editions of the journal who have reflected

for us on their earlier contributions and the

progress that has been made in the care of

people with dementia and late life onset mental

health problems.

Contents / Editorial

Contents

2. EDITORIAL Dr Christina Maciejewski 4. FOREWORD Dr Simon O’Donovan 10. REFLECTIONS ON A COMMUNITY

MEMORY TEAM AND RESEARCH Professor Tony Bayer 20. REFLECTIONS ON SIGNPOST AND

MUSIC THERAPY Dr Julie Wilcox

25. MUSIC THERAPY IN DEMENTIA

CARE: CONNECTING WITHOUT WORDS

Michael Fulthrope 32. ESTABLISHING THE BIGGER

PICTURE: BRAIN IMAGING IN DEMENTIA

Hannah Bowker 35. END OF LIFE CARE: WHAT

MATTERS FOR PEOPLE WITH DEMENTIA

Martina Kane 40. ABOUT ME Lucy Young 43. BOOK REVIEWS David Shannon Katie Glare Peter Davies 48. DID YOU KNOW? BibblePlus 48. NEWS & WEB

Rosalind Cooper

50. INFORMATION ABOUT SIGNPOST

Cover picture: Teapots by Nikita McBride, Emma Hutchinson, Georgia Hall and Lily Glover-Wright, second year art students, Cardiff Metropolitan University. Displayed in Mental Health Services for Older People gardens, Llandough Hospital, Penarth.

3 VOLUME 18, NUMBER 1, October 2013

Dr Simon O’Donovan developed the idea of

Signpost and was the original editor of the

journal. His foreword in this article celebrates

the recent development of Cardiff’s Younger

Onset Dementia Service, highlighting the

progress and change that can be made.

Professor Tony Bayer has led the Memory

Team in Cardiff throughout the time that

Signpost has been produced. In this edition he

reflects on how the pioneering model of

memory assessment services has been taken

up by other services but also reflects on

changes in service provision that have been

necessitated by the six fold growth in new

referrals to the service each month.

This edition also features a range of articles

describing current practice and issues.

Hannah Bowker describes the range of

structural and functional imaging techniques

which are now routinely available to aid

diagnosis and monitor changes over time. This

informative article highlights the advances that

have been made in brain scanning techniques.

In his article on Music Therapy Michael

Fulthorpe provides a clear explanation of the

nature of music therapy and the opportunity it

provides for non-verbal communication before

going on to describe his recent work with

younger people with dementia.

Martina Kane’s article on End of Life Care for

People with Dementia encourages us to

challenge the taboos in our society about

discussing death and to consider what is

needed to allow individuals with dementia to

die with dignity, free from pain and in the place

they feel comfortable.

Rebecca Pearce provides a comprehensive

introduction to the use of mindfulness based

therapy in mental health services and

describes the development of a resource pack

for use with older people.

Dr. Julie Wilcox, consultant clinical

psychologist in stroke services in Cardiff and

Vale reflects on her time as the assistant

psychologist working on Signpost. Having

reflected on all the changes to Signpost over

the years I was pleasantly reassured by the

realisation that the experience of the assistant

psychologists who work so hard to bring this

journal to you have changed little. This brings

me to my final reflections on the development

of the journal over the last 25 years. The

journal has developed from the early ideas and

drive of Simon O’Donovan as editor, through

the hard work of numerous assistant

psychologists who went off in search of

contributors to those very contributors who

continue to drive the journal forward and

challenge our readers with innovative and

informative articles.

Dr. Christina Maciejewski

The views expressed in this journal are not

necessarily those of the editorial staff or

Cardiff and Vale University Health Board

Signpost © 2009 ISSN 1368 – 4345


Dr Simon

O’Donovan is

Clinical Director for

Mental Health

Services for Older

People in Cardiff

and the Vale of

Glamorgan and leads the Younger Onset

Dementia Service. His background is working

as a Consultant Nurse in Safeguarding

Vulnerable Adults. He has contributed to

national policy and strategy development and

has a strong interest in client and caregiver

wellbeing and experience of services.

I am really pleased to write for this twenty-fifth

anniversary edition of Signpost about the

Younger Onset Dementia Service currently

under development in Cardiff and Vale

University Health Board.

The Daffodil Public Health Wales Report

indicates that for Cardiff and the Vale of

Glamorgan there should be 107 people with

dementia under the age of 65 (in 2012), rising

to 122 by 2030. The Alzheimer’s Society states

that there are more than 17,000 younger

people with dementia in the UK. However, it

argues this number is likely to be an under-

estimate and the true figure may be up to three

times higher.

Each person's experience of dementia is

unique. Although the symptoms of dementia

are similar whatever a person's age, younger

people with dementia have different needs for

support. They may:

Be in work at the time of diagnosis

Have a partner who still works

Have dependent children still living at

home

Have ageing parents who they need to

care for

Have financial commitments, such as a

mortgage

Be more physically fit and active

Be more aware of their disease in the

early stages

Find it hard to accept and cope with

losing skills at such a young age

The course of the illness may also be different

in so much as it is likely to more rapidly

progress in working age adults and be more

complex and challenging in its presentation.

Also rarer dementias are more commonly

diagnosed.

The need for the development of a specialised

dedicated service for people with a dementia

diagnosis under the age of 65 and their carers

and families was first raised in this area at a

South and East Cardiff Sector Forum held in

September 1994. But from that date until the

National Dementia Vision for Wales was

launched in February 2011 little progress was

Foreword

or


made, except for the development of a highly

valued but part time (17.5 hours) Information

and Support Officer post which became

available through grant funding in the

Alzheimer’s Society in circa 2005 (now Health

funded).

The National Dementia Vision for Wales

prioritised “creating a new young onset

dementia service for Wales” and allocated a

sum of money to each Health Board to appoint

posts to kick-start service developments. The

Cardiff and Vale allocation was £69,200

recurring and this enabled a full-time Band 6

Dementia Care Advisor and 1.6 wte Band 3

Family Support Worker roles to be appointed.

Resource realignment within the wider service

saw an additional 0.5 wte Clinical Lead

sessions and 0.4 wte Consultant Old Age

Psychiatrist sessions allocated to form the

start-up Younger Onset Dementia (YOD)

Community Service.

The YOD service became operational in

November 2011 and over the first two years

the following service components have been

developed around the assessed needs of

clients and carers.

Post Diagnosis Memory Clinic – Clients

with a diagnosis of a primary

progressive dementia (alcohol related

cognitive impairment is not included in

our eligibility criteria) are referred to the

YOD Service after they have gone

through the assessment and diagnosis

pathway with Cardiff Memory Team. Six

monthly clinic review appointments are

offered on the last Friday of each

month. Two clinics are run

simultaneously and a Consultant Old

Age Psychiatrist is available if an

individual’s mental health is a cause for

concern or medication review is

required.

Post Diagnosis Support Group – Clients

are offered, some months after their

diagnosis, access to a closed

programme of psycho-educational

support. This addresses coming to

terms with the diagnosis, understanding

symptoms of dementia and how to

manage them, sharing diagnosis with

the family etc. A monthly Keeping In

Touch support group is offered after this

in order that friendships formed can be

maintained.

Care Coordination – For clients who are

more complex in their presentation, who

experience behaviour and psychiatric

symptoms of dementia or for whom

there are significant risk or vulnerability

issues, access to specialist secondary

mental health care services are

available. Clients are transferred from

the ‘Primary List’ to the ‘Secondary List’

when they require allocation of a Care

Coordinator under the Mental Health

Measure (Wales) and the development

of a Care and Treatment Plan including

psychiatrist review.


Family Support Worker – Clients on the

Secondary List still living at home have

access to Family Support Worker

sessions. These aim to provide

community support, social activity and

recreation and carer respite. Clients

living alone or where the caregiving

situation is at risk of breakdown are

prioritised for input.

Cognitive Stimulation Therapy Group –

A Friendship Club is offered once a

week in the Assessment and Recovery

(Day Hospital) Unit at Llandough

Hospital for clients on the Secondary

List. The Sterling University Dementia

Services Development Centre Making A

Difference Programme is followed in the

group, with sessions usually comprising

introductions and orientation, welcoming

song, themed music and film clip quiz,

physical activity, relaxation session,

soup and sandwiches (which provides

an opportunity for carer support) and

planning for the next session.

Carers Support Group – Two Carers

Support Groups are held bi-monthly

(one in Cardiff at lunchtime; one in the

Vale in the evening, to allow working

carers to attend). These groups aim to

provide support for carers and families

of younger people with dementia

separate from older age carers support

groups and to allow access to timely

information and education regarding

prognosis, managing challenging

behaviours etc.

The service also has close working

relationships with:

Ty Hapus/Alzheimer’s Society – Ty

Hapus is a charitable status service

commissioned with the Alzheimer’s

Society, providing a Drop-in Cafe and a

Day Care Service for six younger onset

clients.

Cardiff and Vale Local Authorities – If a

client needs assessment for a package

of community care a referral is made to

the relevant Local Authority for this to be

commissioned.

MHSOP Community REACT Service –

If a client needs crisis intervention to

avoid admission to acute mental health

inpatient care a referral to Community

REACT is made. Usually same or next

day urgent or emergency (within 4

hours) assessment can be undertaken

and out of hours care can be provided

for a time-limited period.

MHSOP Assessment and Recovery Unit

– If a client needs an assessment period

within a day hospital environment with

access to multi-disciplinary support a

referral is made to the ARU.

MHSOP Inpatient Services – If a client

needs admission for acute mental


health assessment this is facilitated by

the YOD Service and the Consultant

and Care Coordinator provide in-reach

support for the duration of their inpatient

stay.

As above, most referrals to the service come

via Cardiff Memory Team. However this is not

always the case as younger people with

dementia often have a more convoluted route

to diagnosis, e.g. they may be known to Adult

Mental Health Services before reasons for

cognitive impairment become apparent or they

may be diagnosed by Neurosciences Services

such is the degree of complexity around their

presentation.

As of today’s date (11/11/13) there are 104

clients on our caseload – 41 on the Primary

List, being reviewed at Follow Up Younger

Onset Dementia Memory Clinic, and 63 on the

Secondary List, receiving Care Coordination

and Care and Treatment Planning under the

Mental Health Measure (Wales).

Of the 63 clients on the Secondary List,

3 clients are aged 41-50

16 are aged 51-60, and

44 are aged over 60 years (includes 17

over age 65 as the service does not

transfer clients when they reach their

65th birthday as continuity of care is

viewed as being crucial for clients

mostly with rapidly progressing

conditions).

39 clients have a diagnosis of

Alzheimer’s disease

8 clients have a diagnosis of Fronto-

temporal dementia

3 clients have a diagnosis of Vascular

dementia

3 clients have a diagnosis of Posterior

Cortical Atrophy

2 clients have a diagnosis of Dementia

with Lewy Bodies

2 clients have a diagnosis of

Huntington’s disease

2 Downs and Alzheimer’s

2 Alcohol related dementia

1 Mixed Alzheimer’s/Vascular.

41 clients are living at home supported

by their carer

2 clients are living at home alone

4 clients are in residential or nursing

placements

5 clients are in high cost placements

under Continuing Healthcare funding


10 clients are inpatient within MHSOP

Inpatient services (1 acute assessment

– male; 9 extended assessment – 7

females, 2 males).

Regarding the need for inpatient services,

there has long been a recognition that more

age appropriate facilities were required in

house. Because of the risk posed by caring for

younger clients with challenging behaviours

who are more physically active alongside

elderly clients who are more frail, historically

more high cost out of are specialist placements

have been sought. There has been an

acknowledgement by the Health Board locally

that the cost spent on high cost external CHC

placements could be reinvested to develop a

specialist dedicated Younger Onset Dementia

Inpatient Unit.

Subsequently there has been Board support

for developing a 14 bedded Younger Onset

Dementia Inpatient Unit in St Barruc’s ward at

Barry Hospital (7 female beds; 7 male beds,

provided in group living units) and a

Repatriation Business Case has been

progressed to bring clients back into more

appropriate NHS provision. This Business

Case has enabled additional Multi-disciplinary

Team members to be appointed to the

Younger Onset Dementia Service to the

following extent:

0.4 wte Band 3 Family Support Worker

0.5 wte Band 6 Physiotherapist

0.5 wte Band 6 Occupational Therapist

0.5 wte Band 8b Clinical Psychologist

0.4 wte Band 6 Speech and Language

Therapist

0.4 wte Band 6 Dietician

0.4 wte Band 3 Admin

(with all post-holders working across

community and inpatient services).

An additional 2.0 wte Band 5 Qualified Nurses,

1.0 wte Band 3 Health Care Support Workers

and 2.0 wte Band 2 Nursing Assistants have

also been appointed to increase ward staffing

levels and skill mix to accommodate the

increased therapeutic support needs of clients.

Stephen

Stephen was a 60 year old retired postman

who presented at the District General Hospital

for ENT surgery – cancer of the tonsil. When

he was in-patient it was discovered that the

communication impairment he presented with

was not so much to do with the pain of talking

as an inability to form words and express

himself. A Neurology assessment was

undertaken and a diagnosis of Primary

Progressive Non Fluent Aphasia was given on

the basis of imaging results and clinical

presentation.


Unfortunately Stephen was discharged home

without follow up support before the Younger

Onset Dementia Service could visit him in

hospital. His sister was at home with him but

she was due to leave the UK, as she lived

overseas and had only come home to support

her brother through his hospital stay. Stephen

had no friends or family who could offer

support living in Cardiff.

Stephen presented to the YOD Service with

significant risk factors and high vulnerability,

for example he lived alone, could not safely

cross the main road he lived nearby, could not

handle money and was vulnerable because of

this (he had written his PIN card number on the

back of his card), and could not use the

telephone due to his language deficits.

After initial assessment and allocation of Care

Coordinator, the YOD Service referred

Stephen to the MHSOP Community REACT

(crisis and out of hours) Service. Intensive

support including three times daily support

visits to administer medication, prepare food

and undertake shopping with Stephen was

arranged, until a Local Authority package of

community care could be commissioned.

Support from Speech and Language Therapy

concerning swallow assessment and Dietetics

regarding access to fork mashable diet and

supplements was also essential, as there had

been significant weight loss).

Stephen was maintained at home for six

months until his throat cancer re-emerged and

advanced. Risks became such that inpatient

care was necessitated, for instance he could

not self-medicate when in acute pain and he

refused to put his heater on and became at risk

of hypothermia. In close liaison with his sister

and Palliative Care Team it was decided to

admit him to MHSOP Inpatient Services so that

he could have access to a single room with his

own television and continue with aspects of his

lifestyle, for example watching Jeremy Kyle

each afternoon and evening.

Sadly Stephen died within four weeks of being

admitted to hospital. The YOD Service, with

invaluable support from MHSOP Community

REACT, Cardiff Local Authority and Palliative

Care, was able to support him living

independently for several months and then to

provide a highly supportive environment until

the time of his death.

Conclusions

Reflecting on two years practice in this field, I

have come to realise the most important thing

in working with clients with younger onset

dementia and their carers is that a highly

individualised, person-centred approach is

essential. This goes without saying of course,

but the highest level of dignity and respect in

care requires detailed knowledge of the person

and an understanding of their interests,

lifestyle, ways of being, communication style

and so on.

Another important lesson perhaps is that we

are all in this together. Using first names,

wearing casual clothing, sharing refreshments

together and so on helps convey equal status


within therapeutic groups, for example, and

building trust demands an openness and

sincerity that my previous clinical role did not

demand of me.

Also working closely with clients, carers and

families through the progression of dementia

can be personally distressing. Supporting

people through an illness which encompasses

so many aspects of loss can touch you

profoundly. An awareness of self and access

to personal support and professional

supervision seem to be of paramount

importance.

And of course, we are still learning. It will be

interesting to see how the service develops

over the next two years and I would be happy

to write again for Signpost when it is fully

established.

Resources

Alzheimer’s Society Factsheet:

http://www.alzheimers.org.uk/site/scripts/docu

ments_info.php?documentID=164

Talking Point Forum:

http://forum.alzheimers.org.uk/forumdisplay.ph

p?27-Younger-people-with-dementia-and-their-

carers

Frontotemporal Disease Support Group:

http://www.ftdsg.org/

Lewy Body Dementia Association (USA):

http://www.lbda.org/

Huntington’s Disease Association:

http://hda.org.uk/

Footnote

I would like to thank Dr Christina Maciejewski

on behalf of the service for chairing the

Younger Onset Dementia Steering Group over

many years and leading us to the point we are

now at

Simon O’Donovan

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=164

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=164

http://forum.alzheimers.org.uk/forumdisplay.php?27-Younger-people-with-dementia-and-their-carers



http://www.ftdsg.org/

http://www.lbda.org/

http://hda.org.uk/


Tony Bayer is

Professor of

Geriatric Medicine

in the Cochrane

Institute of Primary

Care and Public

Health in the

School of Medicine

at Cardiff University and Director of the

Memory Team, based at University Hospital

Llandough. He has a longstanding interest in

cognitive impairment and dementia and set up

one of the first Memory Clinics in the country in

the mid-1980s.

Community Memory Team

The objectives of the Community Memory

Project (early identification and diagnosis of

dementia, ongoing support and advice to

patients and their families, and involvement in

training and research) were seen as innovative

when it was first funded by the then Welsh

Office in 1988. They have not changed over

the subsequent 25 years and it is pleasing that

the success of the model has since been

copied across the UK and beyond and the

principles incorporated into national

government policy.

Some aspects have been harder to maintain

than others. The memory clinics were originally

community-based and so convenient for

patients, but the informal agreements that

allowed this have been overtaken by the

growth in NHS bureaucracy of recent years

and now all the clinics are held in local

hospitals. The multidisciplinary nature of the

clinic team has been maintained, though

unfortunately the social worker input was

withdrawn after a few years as there was

concern from social services managers that

the incumbent would be ‘deskilled’ by mixing

too much with health staff. Hopefully the

present moves towards greater integration of

health and social services will eventually lead

to the post being re-established.

The ’20 new patients every month’ has

increased 6-fold, but unfortunately staff

numbers have not grown at the same rate and

we now must rely more on primary care and

third sector organisations to provide ongoing

support after diagnosis. More positively, there

is much greater understanding and less stigma

attached to diagnosis of dementia, access to

neuroimaging as part of the assessment

process is now freely available and use of

symptomatic drug treatment for Alzheimer’s

disease is now routine. Hopefully in another 25

years we will have even more effective

interventions and timely diagnosis and

treatment will be standard practice for all the

ever-increasing numbers of people with

dementia.

25 Year Reflections...

or Reflections on a Community Memory Team and Research


Alzheimer’s research

Research has been described as the process

of going up alleys to see if they are blind.

Some of the issues raised in this article (i.e.

the role of aluminum) have not stood the test of

time. However, most have been developed

further over the years and have provided great

insight into the causes, course or symptomatic

treatment (if not cure) of Alzheimer’s disease.

Genetic studies have been the focus of very

considerable research activity since the article

was written, with Cardiff established as an

international centre in this field. Within the last

few weeks there have been another 11 genes

reported that have been shown to increase the

risk of Alzheimer’s disease and these suggest

a possible role of the immune system and

inflammation, pointing to new alleys to explore.

The article also refers to the critical part played

by the accumulation of amyloid in the brain of

patients with Alzheimer’s disease. It has now

been recognized that this does not cause any

symptoms for perhaps 20 to 30 years, with

dementia developing only in the end stages of

the condition. Therefore any preventive

treatment logically should start early, in middle

age. Recent research findings suggest that the

numbers of people developing dementia are

fewer than predicted based on prevalence

figures from 20 years ago and would seem to

suggest that risk can be reduced, perhaps

through more active treatment of high blood

pressure and cholesterol and from the benefits

of greater access to education earlier in life.

Whilst the ‘new drugs’ mentioned in the article

(THA, HP029 and physostigmine) were never

widely available because of dose-limiting side

effects, the next generation of similar drugs

(donepezil, rivastigmine and galantamine)

were much better tolerated and have become

the standard of treatment for mild to moderate

Alzheimer’s disease. This was only possible

because of the generosity of patients and

carers giving up their time to take part in

clinical trials that proved the value of the new

treatments. It is disappointing that the number

of those participating in research studies is still

very low. Certainly the postscript calling for

research volunteers is as relevant today as it

was 20 years ago.

Professor Anthony Bayer

Clinical Director

Cardiff and Vale Memory Team


Reflections on Signpost and

Music Therapy

They say that a week is a long time in politics –

well 25 years in the development of mental

health services for older people is a lifetime! It

is, after all, a generation. Much can happen in

that time and much certainly has happened to

my knowledge within services in Cardiff. From

my own experience there have been significant

developments in stroke services from the early

days in the ‘old’ St Davids Hospital to the

recent opening of the state of the art Stroke

Rehabilitation Centre at University Hospital

Llandough which we hope will become a

centre of excellence for this patient group.

I started working as an Assistant Psychologist

in Cardiff Health Authority in 1994. The post

was split between the Memory Team and the

Service Development Team (now the Practice

Development Unit) and this arrangement

remains to this day. The Service Development

Team was then housed in the Royal

Hamadryad Hospital but this institution closed

in 2002.

Part of my duties with the Service

Development Team was to take on the role of

Deputy Editor of Signpost (this arrangement for

the assistant post has remained the same to

this day). Having had no experience of

anything remotely connected with publishing it

really was quite a daunting task but so

interesting. Legitimately contacting eminent

authors, requesting them to contribute to the

journal (and then nagging them to adhere to

the deadline), proof reading finished articles

and designing page layouts were all unfamiliar

skills but ones which were soon acquired to

some degree at least. It really was a very

happy time and there was a great deal of

support from the rest of the team – Simon

O’Donovan (Signpost editor in those days),

Sally Furnish (Head of Older Adult Specialty)

as well as social work and nursing colleagues.

The experience and skills I gained from this

post helped me gain a place on the South

Wales Clinical Psychology Training Course.

This trend has continued to my knowledge,

with most if not all deputy editors successfully

completing clinical training!

Signpost itself has become a highly acclaimed

international journal and has made a significant

contribution to the literature on mental health in

older people. I wish Signpost and the team a

very happy 25th Anniversary and hope it will

continue from strength to strength in the future.

A Reflection on the therapeutic importance

of music – then and now

In 1994 when I was an Assistant Psychologist

working with the Service Development Team

(and Deputy Editor of Signpost) I wrote an

article on the therapeutic potential of music

with people suffering with dementia (Signpost

No 28). My reason for doing this was a

reflection of my love of music (I used to be a

25 Year Reflections...


music teacher) and the benefits I had seen

from music with this and other client groups

and medical conditions. A complementary

article was also included in this early edition of

Signpost, written by Rev Haydn Thomas, who

reflected on the importance of music to his wife

throughout her life (she became an

accomplished organist) and the subsequent

comfort music could offer her during her later

life when she developed dementia - a truly

moving description.

Over the years examples of the benefits of

music have frequently been seen in the media

and in the community. The Daily Mail in 2005

reported with the headline “Beethoven, the

best medicine for your heart”. The article

suggested that Beethoven’s slower

symphonies were found to reduce the

circulation, inducing a state of physical calm

which may have benefits for stroke and heart

attack victims. It has also been reported that

music can reduce the need for analgesia

during surgery (“Music meets surgery: two

sides to the art of ‘healing’ “ – Morris and

Linos, Surgical Endoscopy, 2013). The

Tenovus ‘Sing for Life Choir’ was started in

2010 to measure the health and psychosocial

benefits of singing for cancer patients and their

families. Research demonstrated that

each choir member benefited from

an improvement in their mental health and

wellbeing. ‘Singing for the Brain’ is a service

provided by Alzheimer's Society which uses

singing to bring people together in a friendly

and stimulating social environment. The

benefits of music have also been

demonstrated in film – “The Quartet” and

“Song for Marion” stand out as recent

examples.

In this latest anniversary edition of Signpost

the article ‘Music therapy in dementia care’

brings this discussion right up to date. The

article is written by Michael Fulthorpe, a music

therapist, and provides a very interesting,

evidence based account of the success of

music therapy within dementia care. In

particular he describes a piece of work

undertaken within the Young Onset Dementia

service in Cardiff. The benefits of this closed

music therapy group for clients, staff and family

members have been clearly outlined and the

interesting question was posed as to what may

have emerged for this client group if the music

therapy sessions had been able to run for a

longer period of time. This evidence suggests

that we need to create more opportunities for

music and art therapies within our services.

There seems no doubt that music has

significant healing benefits and can reach out

to those who for one reason or another have

reduced communication or other mental or

physical health conditions. As Oliver Sacks

stated in ‘Awakenings’ – “The power of music

to integrate and cure …… is quite

fundamental. It is the profoundest nonchemical

medication.”

Dr Julie Wilcox Consultant Clinical Psychologist Stroke Rehabilitation Centre University Hospital Llandough


Michael

Fulthrope has a

MA in music

therapy from the

University of the

West of England

and a BSc in

Social Sciences

from the

University of

Bath. He has almost ten years experience in

the health and social care sector, working in a

variety of roles including dementia, mental

health, neuro-rehabilitation and learning

difficulties. Music is central to his life and he

enjoys sharing it with others.

George*, a 90 year old man was sat in the

lounge of his care home, his faced looked drawn

and his posture stooped. Two other residents

were sat around in the room but seemed lifeless;

any conversation between them appeared to be

just too difficult. I handed George a harmonica,

an instrument he had played throughout his life.

He held it to his lips and played a glissando

chord and immediately a smile beamed across

his face. Maggie, 93, and Edith, 82 soon looked

up and caught George’s eye, who soon began

playing a lively Irish jig. Within moments, it was

as if the room had been filled with new found

energy and optimism. George’s musical

performance was obviously impressing the

ladies, Maggie tapped her feet in time with the

music and smiled broadly, while Edith had risen

to her feet and was dancing across the room

with her walking stick. George’s eyes glistened

with delight as the musical ‘conversation’

unfolded.

George, Maggie and Edith were all living with

dementia, yet in the moment described the

condition seemed to have no significance at all.

From an observer’s perspective, three people

were simply enjoying a shared musical moment

together.

The above vignette was not a music therapy

session; in fact at this stage I was unaware of

the music therapy profession. However, this visit

to a dementia care home highlighted to me the

transformative power that music possesses.

George was my grandfather and the effects of

his harmonica playing in the latter stages of his

life inspired me to learn more about music,

emotion and the brain. This exploration led me

to train as a music therapist.

What is music therapy?

A music therapist in the UK will have trained to a

Masters Degree level and will be registered by

the Health Care Professionals Council (HCPC)i.

The training requires numerous hours of

personal psychotherapy and supervised

professional placements alongside core

Music Therapy in Dementia Care: ‘Connecting Without Words’

Music therapy in dementia...


theoretical and practical musical studies.

Several academic assignments are graded

during the training, concluding with a final year

research based dissertation.

The British Association of Music Therapy

(BAMT)ii defines music therapy as “a

psychological therapy which uses mainly

musical improvisation to build a relationship

between therapist and client” (BAMT, 2013).

Music therapists work with a range of clients,

both individually and in groups and from young

babies to those living with older age dementia.

Dementia work is perhaps particularly effective

as many people with the condition suffer from

extreme isolation due to loss of language and

cognitive skills (Wall and Duffy, 2010). Music

therapy provides an opportunity for non-verbal

communication and social interaction and

through unique techniques may allow isolated

people to be heard (Abad, 2002). To feel

listened to and attended to are fundamental

human needs which correlate directly to a

person’s quality of life.

The unique qualities of music

It is strongly contested that music itself has inert

therapeutic qualities. For example, Neurologists

such as Oliver Sacks have devoted much time

to the study of music and the brain and describe

some fascinating case studies (Sacks, 2007). A

BBC documentary first broadcast in 2008 further

investigated some of Sacks case studies and

also showed how music can have an immensely

emotive effect on the brain. The latter was

highlighted by fascinating MRI scan results on

the presenter Alan Yentob whilst he listened to

particular musical piecesiii.

Recent scientific research carried out by

prominent psychologist Daniel Levitin and his

team in Montreal highlighted music contains

anti-anxiety properties. Levitin’s studies also

discovered how the brain’s reward centre

responds to music and can release dopamine, a

chemical often released with pleasures such as

sex or eating food (Chanda and Levitin, 2013).

The healing power of music is evidenced in

literature dating back thousands of years which

transcends across many cultures (McClennan,

2000) but today we are beginning to use

advancing technology to scientifically analyse its

properties. Such complex musical analyses are

still in their infancy but Levitin and others are

excited to what future research may discover.

Last year, a You Tube clip of Henryiv, a man with

dementia who becomes extremely animated

when listening to an iPod went viral. There are

certain parallels between Henry’s response to

music and to my opening vignette, as both

highlight the potential of music to enliven people

with dementia. However, we must remain wary

of not simply prescribing iPods or harmonicas in

dementia wards as a ‘quick fix’. The reason

being is the human interaction and ‘positive

person work’ (Kitwood, 1997) witnessed when

the carer and interviewer engage Henry in

conversation about his favourite music is

perhaps the most powerful element of the clip.

This notion of social interaction is also prominent

in the opening vignette, where arguably it was

the human connections that emerged from


George’s music which really enlivened him and

shifted his energy so markedly.

It is in this area of interaction and making

connections with people through music where

music therapists are particularly skilled.

Developing a combination of advanced musical

ability and an astute empathic ear are

fundamental to the training, and when these

skills are used within a safe therapeutic musical

relationship with a client, there is a great

potential for therapeutic growth. Music has its

own healing properties and furthermore, it is a

universal and non-threatening medium that

everyone can relate to in some way. Music has

played a central role throughout the lives of

many dementia clients and familiar songs can

often trigger strong memories and emotions.

The ‘Singing for the Brain’v project has been a

national success and those who have witnessed

the groups in action may be very familiar with

the powerful effect singing has for those with

dementia. A person may struggle to remember

names, places or what they had for breakfast yet

almost miraculously, they can often recite and

sing all the words from a familiar song. Such

instances are witnessed frequently in music

therapy sessions and can bring physical and

psychological benefits to clients (Abad, 2002,

Clair, 2000, Cuddy and Duffin, 2005); an

experience which is powerfully exemplified by

Henry during his clip.

Music therapists also work in a way that

maximises what a person with dementia can do

rather than focussing on what has been lost.

This leads nicely on to my next vignette, taken

from my final year music therapy placement.

The work

The work took place within the younger onset

dementia (YOD) service of Cardiff and Vale

University Health Board Mental Health Services

for Older People (MHSOP). The YOD service

holds a weekly ‘Friendship Club’ (Cognitive

Stimulation Therapy Group) which is based on

the Stirling Dementia Services Development

Centre ‘Making a Difference’ programmevi. It

was within this ‘Friendship Club’ that a 6 week

closed music therapy group was set up.

Within the group, one client had very limited

verbal communication and could only manage a

few words. Despite her difficulties with

communication she appeared cognitively very

alert and due to indicators such as her timing of

vocal sounds and her expressive facial

expressions there was a real sense that she had

a lot to give.

Music therapy allowed this lady to really express

herself in a communicative manner without the

need for words. Instead she was able to find her

own way to be heard through musical

improvisation and song. During group music

improvisations, all clients and staff would be

invited to play a variety of instruments and/or

use their voices, or to simply listen if they

preferred. As the music unfolded, this particular

client would often choose to tip an ocean drum1

1 Ocean drum = a percussion instrument containing metal

beads. When the drum is moved around, the beads inside swirl

around creating sounds often associated with the ocean.


on her lap, creating a dramatic wave like

“swooosh” sound or would gently brush her

fingers across the chime bars to make a twinkly

metallic sound. Other times she would choose a

loud maraca and vigorously shake it in her arms

or play it with a steady pulse. Whatever sound

she produced would be appropriate in the group

context in terms of dynamics, rhythm, and

overall musical texture. When she received

either musical or verbal feedback from others

regarding her own sounds, her face would often

light up with delight and she would often then

become more vocal. One staff member

witnessed the client’s new behaviours within the

group improvisation and commented afterwards

“It’s amazing what music does for her….. her

eyes!”. In another musical improvisation, the

therapist chose to sing a line from a famous

Beatles song “All you need is love” as everyone

played their chosen instruments. This sparked

an immediate response from the client. She

looked up, smiled and then made vocal sounds

which appeared to follow the pitch and melodic

contour of the song.

Music therapy seemed to unlock this lady’s

potential for non-verbal communication. The fact

she felt able to be heard within the group

possibly also had a knock-on effect of

encouraging verbal responses as she would

often make comments during the group such as

“nice”, “yes”, and “lovely”. It would have been

interesting to see what may have emerged for

this client and for the other younger onset

dementia group members if music therapy was

able to run for a longer period of time.

Last year’s MHSOP review paper stated:

“There are future investment needs around

addressing critical therapy deficits and

supporting younger onset dementia service

developments...” (MHSOP, 2012: 9).

It is suggested that music therapy with its

unique, universal and non-threatening approach

would be a strong and creative choice to

improve service provision.

In total, over twenty clients accessed music

therapy during my placement within the MHSOP

and the sessions were very well received by

clients, staff and family members. The music

therapy work incorporated tailored one to one

work, small closed groups and larger open

groups. Feedback included;

“Having witnessed the intervention, music

therapy was able to engage clients with different

needs and abilities for significant periods of time

and there were definite gains in terms of well-

being during and after the sessions” (staff).

“The after effects of X attending music therapy

were noted on almost every occasion with X

seeming much happier and content. I believe

that to improve the service offered to the client’s

music therapy should be available everyday”

(staff).

“Thank you so much for what you have done for

us” (client).


The flexible and improvisational approach of

music therapy means that it can be tailored to

the individual no matter what form or stage of

dementia and/or mental health the person is

experiencing. This sits well with the NICE

guidelines for dementia care, which advise that

interventions are tailored to the person’s

preferences, skills and abilities (NICE, 2012:

36).

Indeed music therapy has been recommended

in the NICE guidelines to address non-cognitive

symptoms and challenging behaviour for people

living with dementia. (NICE, 2012). Furthermore

the NICE guidelines state that unless the person

with dementia is severely distressed or there is

an immediate risk, non-pharmaceutical options

such as the therapeutic use of music “should be

followed before a pharmacological intervention

is considered” (NICE, 2012: 30). Pharmaceutical

advances mean that dementia medication is

constantly improving and for many people, these

drugs can certainly improve their quality of life.

Yet certain pharmaceutical interventions carry

dangers of “severe adverse reactions” including

“cerebrovascular risks” and even the possibility

of “death” (NICE, 2012: 31). It is therefore is

paramount that alternative approaches to

manage dementia are fully explored.

The dementia situation

“There are around 800,000 people with

dementia in the UK, and the disease costs the

economy £23 billion a year. By 2040, the

number of people affected is expected to double

- and the costs are likely to treble” (Department

of Health, 2013).

Such shocking statistics are forcing

governments into action. Indeed, David

Cameron has promised to more than double

research funding for dementia to £66m by 2015

(The Guardian, 2012). Wiener (2007) highlights

the global impact, with dementia prevalence

likely to quadruple worldwide by 2041.

Focussing on the local area does not brighten

the situation. A recent public health report

sighted estimations that the number of people

over 65 years with dementia in Cardiff and Vale

will rise from 5,144 in 2012 to 6,849 in 2025, a

33% increasevii.

The report also shows estimated early onset

dementia projections (for those aged 30-64) and

although acknowledging these figures to be

relatively small the report highlights that “this

group may have a greater need for specialist

care and treatment than other age groups”

(Hopkins, 2013: 22). The Clinical Director of the

Cardiff and Vale YOD Service strongly

understands this premise and when reflecting on

the music therapy work stated... “We are

developing the YOD service and multi-

disciplinary team over the next year or two. I

definitely see a place for music therapy and art

therapy within the ideal service model”.

Conclusion

The increasing strain on resources is painfully

obvious, meaning that cost-effective treatments

for dementia will become ever more desirable.

Music and dementia has been thrust into the


public’s awareness in recent years, helped by

the fantastic success of projects such as

‘Singing for the Brain’ and by You Tube clips

such as Henry’s. Music therapy as a profession

needs to continue to improve the ever increasing

body of evidenceviii and perhaps the health

profession and society as a whole needs to

creatively adapt to the dramatically expanding

field of dementia care and create more

opportunities for music and the art therapies to

infiltrate the sector.

References

Abad, V. (2002). Reaching the Socially

Isolated Person with Alzheimer’s Disease

Through Group Music Therapy – A Case

Report.

Voices: A World Forum for Music Therapy, 2

(3).

British Association of Music Therapy (BAMT).

(2012). Music Therapy in Dementia Care.

www.bamt.co.uk [Accessed online on

9.8.2013].

Clair, A. A. (2000). ‘The Importance of Singing

with Elderly Patients’. In Aldridge, D. (Ed.),

Music Therapy in Dementia Care, (pp. 81-101).

London. Jessica Kingsley Publishers.

Cuddy, L, L. and Duffin, J., (2005). Music,

memory and Alzheimer’s disease: is music

recognition spared in dementia, and how can it

be assessed? Med Hypothesis, 64 (2): 229-

235.

Chanda, M, L., and Levitin, D. J,. (2013). The

neurochemistry of music, Trends in Cognitive

Sciences, 17 (4): 179-193.

Department of Health (2013). Policy: Improving

care for people with dementia.

https://www.gov.uk/government/policies/improv

ing-care-for-people-with-dementia

[Accessed online on 10.8.2013].

Hopkins, S. (2013). Getting the balance right:

allocating resources for health and wellbeing.

Annual report of the Director of Public Health

for Cardiff and Vale, 2012.

Kitwood, T. (1997). Dementia Reconsidered:

The Person Comes First. Buckingham: Open

University Press.

McClennan, R. (2000). The Healing Forces of

Music: History, Theory and Practice, Lincoln,

USA, toExel.

Mental Health Services for Older People

(MHSOP) Service Modernisation Programme

Report (2012).

http://www.cardiffandvaleuhb.wales.nhs.uk/site

splus/documents/864/4%2081.pdf

[Accessed online on 10.08.2013].

NICE. (2012). NICE clinical guideline 42 (last

modified, October 2012), Dementia: supporting

people with dementia and their carers in health

and social care.

http://www.bamt.co.uk/

https://www.gov.uk/government/policies/improving-care-for-people-with-dementia

https://www.gov.uk/government/policies/improving-care-for-people-with-dementia

http://www.cardiffandvaleuhb.wales.nhs.uk/sitesplus/documents/864/4%2081.pdf

http://www.cardiffandvaleuhb.wales.nhs.uk/sitesplus/documents/864/4%2081.pdf


London: NICE.

http://www.nice.org.uk/nicemedia/live/10998/30

318/30318.pdf

[Accessed online on 14.8.2013]

The Guardian. (2012). For dementia sufferers,

music unlocks the door for real personality to

shine.

http://www.guardian.co.uk/society/2012/apr/15/

power-song-helping-people-dementia

[Accessed online on 17.8.2013]

Sacks, O. (2007). Musicophilia: Tales of Music

and the Brain. London: Picador.

Wall, M., and Duffy, A. (2010). The effects of

music therapy for older people with dementia,

British Journal of Nursing, 19(2): 108-113.

Wiener, J. (2007). Quality assurance for long

term care: the experiences of England,

Australia, Germany and Japan, AAPP,

Washington.

http://asses.aarp.org/rgcenter/il/2007_05_Itc.p

df [Accessed online on 10.8.2013]

Footnotes

a Heath Care Professionals Council –

www.hpc-uk.org

b British Association of Music Therapy website

– www.bamt.co.uk

c BBC documentary (2008); Oliver Sacks:

Tales of Music and the Brain –

http://www.bbc.co.uk/imagine/episode/oliver_s

acks.shtml

dHenry: You Tube clip -

www.youtube.com/watch%3Fv%3DFw7Y78aqf

_I

e Singing for the Brain : Alzheimer’s Society -

www.alzheimers.org.uk

f Dementia Services Development Programme,

Stirling -

http://www.dementia.stir.ac.uk/creativity

g Taken from Daffodil Cymru: Dementia

estimates for Wales (2013) -

www.daffodilcymru.org.uk

h To view examples music therapy research,

see the Evidence bank - www.nordoff-

robbins.org.uk

http://www.nice.org.uk/nicemedia/live/10998/30318/30318.pdf

http://www.nice.org.uk/nicemedia/live/10998/30318/30318.pdf

http://www.guardian.co.uk/society/2012/apr/15/power-song-helping-people-dementia

http://www.guardian.co.uk/society/2012/apr/15/power-song-helping-people-dementia

http://asses.aarp.org/rgcenter/il/2007_05_Itc.pdf

http://asses.aarp.org/rgcenter/il/2007_05_Itc.pdf

http://www.bbc.co.uk/imagine/episode/oliver_sacks.shtml


http://www.alzheimers.org.uk/


http://www.daffodilcymru.org.uk/

http://www.nordoff-robbins.org.uk/



Establishing the Bigger Picture – Brain Imaging in Dementia

Hannah Bowker is

a Psychology

undergraduate at

Cardiff University.

She recently

worked with the

Cardiff Memory

Team at

Llandough

Hospital on a university placement year.

‘Brain imaging’ involves capturing images of

different parts of the brain and is extensively

used in both the clinical and research domains.

There are a number of different types of brain

scan, which provide images of varying detail.

This article will discuss how brain scans are

used for assisting in the diagnosis of

dementias, whilst also describing how specific

brain scanners produce these images.

In some conditions, a definitive diagnosis can

only be established after a post-mortem has

been conducted, Alzheimer’s disease (AD) is

one example of this. The pathology of AD

occurs on a cellular level and can only be

examined via histology of the brain tissue post-

mortem. However, biological brain changes

also occur in patients with AD and other

dementias. Brain imaging techniques can be

used to establish the areas of the brain that

deviate from what one would expect to see in

normal ageing which may indicate a specific

type of dementia. In addition, the development

of the disease can be monitored, allowing the

pathology to be tracked and ensure the most

effective treatment is provided.

Structural Imaging Computerised

Tomography (CT)

CT scans provide information about the

structure of the brain and are often used to

assist diagnosis of dementias. These scans

involve passing an x-ray beam at various

angles through the head. The strength of the

beam is then measured after it has passed

through the skull and brain tissue. The strength

of the x-ray beam is reduced when passing

through dense bone; appearing white on the

scan image whereas soft tissue and fluid

appear darker. Multiple images of the brain

are created as the patient passes through the

scanner, forming a series of 2-dimensional

cross sectional images.

Typically, patients with AD may show loss of

cells in the medial temporal lobe, specifically

the hippocampal region which is involved in

memory functioning. In contrast, patients with

frontotemporal dementia show brain shrinkage

in the frontal and the anterior temporal lobes.

Although beneficial for establishing areas of

the brain that have reduced volume, CT scans

are unable to differentiate the pathology

underlying the change. Furthermore, minor

changes in the brain that can be indicative of

Brain imaging in dementia…

Brai...


early AD may not be identified by CT scans

and white matter changes due to vascular

pathology may not always be seen clearly.

This is a major disadvantage of CT images as

grey and white matter changes are shown to

occur at different stages of the disease

process in disorders such as AD (Serra et al.,

2010).

Magnetic Resonance Imaging (MRI)

MRI is another type of structural imaging

technique which uses strong magnetic fields to

produce clearer and more detailed images of

the brain. These scans work because

hydrogen atoms in the brain produce a small

magnetic field. When placed inside a larger

magnetic field, the hydrogen nuclei will either

align with the larger magnetic field in a parallel

orientation (known as low-energy nuclei) or a

perpendicular orientation (known as high-

energy nuclei). The scanner then produces

radio waves of a specific frequency, which

causes some of the low-energy nuclei to align

against the magnetic field. When this radiation

is discontinued, the scanner detects the energy

emitted as the nuclei return to their low-energy

state. These changes in energy level are

detected by the scanner and provide a detailed

image of the brain. The images obtained are of

a higher resolution than those obtained with

CT and vascular changes are seen much more

clearly.

Functional Imaging

Whilst both CT and MRI scans are used to

establish abnormalities in brain structure,

alternative scanners are used to measure vital

functions of the brain. These functional

imaging techniques are based on the premise

that loss of nerve cells result in reduced blood

flow to the same areas of the brain and

subsequently, reduced levels of oxygen and

glucose in these areas. In support of this,

research has shown that decreased metabolic

rate of these substances correlates with more

severe cognitive impairment (Herholz, 2003).

Furthermore, the region of this decrease may

indicate the type of disorder. For example,

individuals with frontal dementia will show less

activity in the frontal cortex compared to

individuals with semantic dementia, who will

show under activity in the temporal cortex and

amygdala, highlighting the different regions of

the brain affected in different disorders.

Unlike structural imaging, functional imaging is

advantageous as it can detect subtle changes

in the brain which may suggest early stages of

the disease process. For many disorders,

including AD, early diagnosis is crucial as early

intervention may have the potential to slow the

patient’s cognitive decline.

Positron Emission Tomography (PET)

One type of functional imaging technique

which can be used to assist the diagnosis of

neurological conditions is PET. This type of

scan involves introducing a radioactive tracer

into the body via injection or inhalation. The

tracer consists of a radioactive substance

which attaches itself to a natural chemical of

interest. Once the tracer is introduced, it emits


particles called positrons. When a positron is

destroyed it releases bundles of energy called

photons, which travel in opposite directions

and are recorded by the scanner as they arrive

at detectors spaced 180° apart. The

information gathered from the detectors allows

the pathway of the energy to be tracked,

producing an image of the brain’s functions.

PET scans are not widely available and are

mainly used as research tools. However, they

are especially useful in allowing differentiation

between types of dementia. For example,

certain PET scans are able to identify amyloid

plaque in the brain of patients with AD, which

can only usually be determined via histology.

The amyloid deposits can also be identified at

a very early stage, even before the patient’s

symptoms are sufficiently severe to cause

dementia. In addition, PET scans offer better

spatial resolution than other types of functional

scan and can detect even small changes in

brain functions that other imaging techniques

may overlook.

Single Photon Emission Computed

Tomography (SPECT)

SPECT scanning is similar to PET as it

involves the injection or inhalation of a

radioactive tracer. The tracer produces a single

photon emission as it decays. The location of

this emission is used by the scanner to

generate three-dimensional images showing

blood flow around the brain (Lucignani, 2008).

SPECT is a useful technique for exploring

brain chemistry and is less expensive to

perform than PET and potentially widely

available. However, it has lower spatial

resolution than PET, especially when imaging

deeper structures of the brain. In addition,

SPECT is less precise for establishing the

source of a photon emission as it involves only

a single emission. By comparison, PET uses

two photons travelling in opposite directions

and therefore provides greater information to

determine the source of the emission.

Dopamine Transporter (DAT)

DAT scans are used to distinguish between

disorders such as Dementia with Lewy Bodies

(DLB) and Parkinson’s disease dementia

(PDD) from AD. DAT scans involve injecting an

active substance into the bloodstream which

attaches itself to structures that transport

dopamine. The scan can then detect reduced

levels of dopamine in the brain. These reduced

levels indicate a loss of nerve cells in that area

of the brain which can help to distinguish DLB,

PDD and AD.

Conclusion

It is evident that both structural and functional

imaging techniques provide knowledge about

the areas and functions of the brain that are

affected in dementia. Imaging techniques not

only distinguish one disorder from another,

they also allow the progression of a disease to

be monitored. For this reason, they are

extremely powerful tools for use in both clinical

and research areas. However it is important to

note that dementia cannot be diagnosed by a

scan. Nevertheless, scan results can


contribute to identifying the likely cause of a

diagnosis of dementia and brain imaging

techniques play an increasingly important role

in establishing the complete diagnostic picture.

References

Drzezga, A., Grimmer, T., Henriksen, G.,

Stangier, I., Perneczky, R., Diehl-Schmid, J.,

Kurz, A. (2008). Imaging of amyloid

plaques and cerebral glucose metabolism in

semantic dementia and Alzheimer’s

disease NeuroImage, 39, 619-633.

Herholz, K. (2003). PET studies in dementia.

Annals of Nuclear Medicine, 17, 79-89.

Mortimer, A., Likeman, M. & Lewis, T. (2013).

Neuroimaging in dementia: a practical

guide. Practical Neurology, 13, 92-103.

Serra, L., Cercignani, M., Lenzi, D., Perri, R.,

Fadda, L., Caltagirone, C., ... Bozzali, M.

(2010). Grey and white matter changes at

different stages of Alzheimer’s disease.

Journal of Alzheimer’s disease, 19, 147-

159.

Lucignani, G. (2008). Clinical use of dopamine

transporter imaging in movement

disorders: benefits and appropriate use.

European Journal of Nuclear Medicine and

Molecular Imaging, 35, 1213-1217.

End of Life Care: What

Matters for People with

Dementia

Martina

Kane is

Senior

Policy

Officer at

the

Alzheimer’s

Society. Since joining the Society in January

2011, Martina has worked gathering evidence

and writing a report on dementia and end of life

published in October 2012. She also

researched and co-authored ‘Dementia 2013:

The hidden voice of loneliness’ about social

isolation and loneliness among people with

dementia. In addition she has worked to

support the All-Party Parliamentary Group on

Dementia Inquiry into the diagnosis of

dementia ‘Unlocking Diagnosis’.

I think, at the end, it wants to be so the person

is least stressed or upset or in [as little] pain as

possible, so they can be calm and go with

dignity. When they get to the point of no return,

as it were, I think they should be allowed to go

peacefully.

- Daughter of someone with dementia

End of life care…

Brai...

http://www.sciencedirect.com/science/article/pii/S1053811907008063

http://www.ncbi.nlm.nih.gov/pubmed?term=Serra%20L%5BAuthor%5D&cauthor=true&cauthor_uid=20061634

http://www.ncbi.nlm.nih.gov/pubmed?term=Cercignani%20M%5BAuthor%5D&cauthor=true&cauthor_uid=20061634

http://www.ncbi.nlm.nih.gov/pubmed?term=Lenzi%20D%5BAuthor%5D&cauthor=true&cauthor_uid=20061634

http://www.ncbi.nlm.nih.gov/pubmed?term=Perri%20R%5BAuthor%5D&cauthor=true&cauthor_uid=20061634

http://www.ncbi.nlm.nih.gov/pubmed?term=Fadda%20L%5BAuthor%5D&cauthor=true&cauthor_uid=20061634

http://www.ncbi.nlm.nih.gov/pubmed?term=Caltagirone%20C%5BAuthor%5D&cauthor=true&cauthor_uid=20061634

http://www.ncbi.nlm.nih.gov/pubmed?term=Bozzali%20M%5BAuthor%5D&cauthor=true&cauthor_uid=20061634


One in three people will have dementia when

they reach the end of their lives (Brayne et al

2006). Yet, too often, people with dementia

are not dying in the places that they would

wish, and in some cases die in pain and

without being treated with dignity. The End of

Life care strategy (Department of Health, 2008)

suggests:

‘Although every individual may have a different

idea about what would, for them, constitute a

“good death”, for many this would involve:

• Being treated as an individual, with dignity

and respect;

• Being without pain and other symptoms;

• Being in familiar surroundings; and

• Being in the company of close family and/or

friends.’

This is just as true for people with dementia as

it is for people who have other health

conditions. Yet there are particular features of

dementia which cause problems around

ensuring that someone can have a ‘good

death’ and which means that there may need

to be more thought and planning put into their

care than is currently the case.

All of the 800,000 people with dementia in the

UK will face additional complications at the end

of their lives, regardless of whether their death

is caused by the dementia or by another

disease (Alzheimer’s Society 2012).

Diminishing mental capacity and difficulty with

communication are particularly difficult,

especially where the person is unable to

communicate basic needs, such as hunger and

thirst, or discomfort and pain. Professionals,

particularly people who may not be specialists

in dementia or end of life care, may also lack

the skills to deal with the challenges presented

when someone who has dementia is at the end

of their life. They may communicate

insensitively, or be unwilling to discuss death

and dying. They may not be able to detect or

meet the needs of someone with dementia.

They may have difficulties working with the

relatives of the person with dementia or in

making decisions about the person’s care.

For the report ‘My Life until the end’

(Alzheimer’s Society 2012), the Alzheimer’s

Society spoke to a number of people with

dementia, carers and former carers about the

issues surrounding end of life care for people

with dementia. The report identified some key

areas of concern which are explored here.

Dignity

A key concern for many of the former carers

who contributed to the report was the lack of

dignity in treatment for the person they cared

for in their final days. There were frequent and

distressing reports of very poor, undignified

treatment, particularly in hospital. Numerous

participants reported that the person with

dementia had not been helped to the toilet or

changed, so they had to sit in their own faeces

or urine for some time. There were also

reports of inappropriate food and drink, and

comments that some staff were rude or


uncaring and there was not due attention paid

to a person’s privacy, such as not drawing a

screen while the person was being helped to

undress. The Department of Health

commissioned VOICES survey also found that

29% of relatives of people with dementia said

that the person was only treated with dignity by

hospital nurses some of the time (Department

of Health, 2012). This was higher where the

person had dementia on their death certificate

compared to other conditions.

Dignity in treatment involves meeting the basic

standards of care, and a failure in this can be

additionally upsetting if it occurs in the final

days of someone’s life. While there may be

additional barriers created by a person with

dementia’s reduced mental capacity, or their

experiencing difficulty communicating, with

good training and adequate resource staff can

use the principles of person-centred care to

ensure that all people with dementia are

treated with dignity at the end of their lives.

Tools such as the Alzheimer’s Society ‘This is

me’ document (Alzheimer’s Society 2010),

which records the preferences and wishes of

the person with dementia, can encourage care

which sees the whole person, not just the

symptoms.

Free from pain

Pain is acknowledged to be under recognised

and under treated in people with dementia.

There is academic evidence to suggest that

people with dementia in hospital receive fewer

interventions to alleviate pain that people

without dementia (Sampson et al 2006). Pain

from pre-existing conditions (such as arthritis)

or discomfort (such as constipation), which

cannot be communicated, can often go

untreated (Scott et al, 2011).

Making assessment of pain routine practice,

and encouraging medical professionals to use

all communication from the person with

dementia (including facial expressions and

other non-verbal communication) in order to

assess whether the person with dementia is in

pain, are the first steps to ensuring that people

with dementia do not reach the end of their

lives in pain. Routine use of pain assessment

tools can be helpful in promoting this and

ensuring that it is done in a consistent manner.

Place they are comfortable

There is a drive within end of life policy to

support people to be able to die in the place

that they would choose (Department of Health

2008). Yet while few state that hospital would

be their place of choice, many people,

including those with dementia, die in hospital.

In 2010 30% of people with dementia recorded

on their death certificate died in hospital. 63%

died in a care home, and only 6% died in their

own home (Alzheimer’s Society 2012). It is

also possible that the true figure for deaths in

hospital is even higher as many elderly people

with less advanced forms of dementia may be

admitted to hospital for a different condition

and have that condition recorded on their

death certificate.


Care of patients in hospital is still largely crisis

driven which means that end of life care can

often be poor (National Confidential Enquiry

into Patient Outcome and Death 2012). By

contrast, the VOICES survey asked about end

of life care in care homes (Department of

Health 2012). They found that relatives of

people who had dementia recorded on their

death certificate were more likely to rate the

care in the care home as good or excellent and

less likely to rate it as fair or poor than relatives

of people who did not have dementia on their

death certificate. This points to the possibility

that some care homes are developing good

practice in end of life care for people with

dementia, and can provide a good experience

for people, experiences which should be

replicated in more settings.

Many of the problems identified, including

unplanned admissions to hospital which were

contrary to the known wishes of the person

with dementia, stem from a lack of co-

ordination in care (Alzheimer’s Society 2012).

Carers frequently report having to state details

of care plans to each of the different

professionals involved in care. By contrast,

some of the best experiences had occurred

when care had been well co-ordinated, no

matter the location.

It is clear that there is still development needed

to ensure that every person with dementia

experiences joined-up care at the end of their

lives. Suggestions in the Palliative Care

Funding Review (Hughes-Hallett et al 2011) if

implemented would greatly benefit people with

dementia.

Wishes are known and acted on

The difficulties outlined above highlight the

importance of planning with people with

dementia for their future care. Not having a

clear idea of what the person with dementia

would want can lead to extensive problems as

mental capacity diminishes and decisions have

to be made on their behalf. Yet there are still

many cultural barriers which mean that many

people with dementia may not communicate

early enough what they would want about their

end of life care, so decisions then need to be

made at the time in ignorance of their wishes.

The double stigma that surrounds dementia

and death needs to be tackled, not only with

the general public to encourage people to talk

about what they would want before dementia

even develops, but also with health

professionals working with people with

dementia in the early stages of the disease.

Very few people who contributed to the ‘My life

until the end’ report remembered the subject of

end of life care being discussed with the

person with dementia by health professionals.

Many reported that it was not discussed at all,

or it was only discussed because the

conversation was initiated by the person with

dementia.

It is clear that planning care, even if it is an

unstructured conversation about the person’s

wishes, makes decision-making easier at the

end of life (Wendler and Rid, 2011).


Understanding the person’s wider wishes, such

as their idea of a good death and spiritual,

cultural, emotional and family factors that they

would want taken into account, is particularly

important when making decisions on their

behalf.

What needs to change

In many cases the present health and care

system is not meeting the challenge posed by

dementia. While there is good practice

developing in some areas, an integrated

approach is needed across the whole country.

A sea-change in attitudes to both dementia

and dying would encourage planning in

advance. Routine pain assessment should

form part of a system of person-centred care

for all people with dementia in all settings.

Each person with dementia is different and it is

essential that the wishes of each individual are

understood and carried out so that people with

dementia can die with dignity, free from pain

and in the place they feel comfortable.

The full ‘My life until the end: Dying well with

dementia’ report can be downloaded for free at

www.alzheimers.org.uk/endoflife

References

Alzheimer’s Society (2010) ‘This is Me’.

Alzheimer’s society, London

Alzheimer’s Society (2012) My Life until the

end. Alzheimer’s Society, London 2012

Brayne, C, Gao, L, Devey, M, and Matthews

FE (2006) Dementia before death in ageing

societies: The promise of prevention and the

reality. PLoS Med 3(10) e397

Department of Health (2008) End of life care

strategy. Department of Health, London

Department of Health (2012) First National

VOICES survey of bereaved people: key

findings report. Department of Health, London

Hughes-Hallett, T, Craft A and Davies, C

(2011) Funding the right care and support for

everyone: Creating a fair and transparent

funding system: the final report of the Palliative

Care Funding review.

National Confidential Enquiry into Patient

Outcome and Death (2012) Time to intervene?

A review of patients who underwent

cardiopulmonary resuscitation as a result of an

in-hospital cardio-respiratory arrest.

Sampson, E, Gould, V, Lee, D and Blanchard,

M (2006) Differences in care received by

patients with and without dementia who died

during acute hospital admission: a

retrospective case note study. Age and Ageing

35 (2):187-189

Scott, S, Jones, L, Blanchard, M and

Sampson, E (2011) Study protocol: the

behaviours and pain in dementia study

(BePaid) BMC Geriatrics, 11:61

Wendler, D and Rid, A (2011) Systematic

review: The effect on surrogates of making

treatment decisions for others. Annals of

Internal Medicine, 154 (5): 336-346

http://www.alzheimers.org.uk/endoflife


‘They take you on a journey

of what their lives have been’

Lucy Young

currently works in

REACT, a crisis

service for older

adult mental

health and people

with dementia.

She has been in post as a Dementia Care

Advisor for a little over a year. Previous to this

Lucy has worked as an Assistant Psychologist

for approximately 6 years after graduating in

Psychology in 2005. Constantly developing

her academic study alongside her working

positions, she has worked in various Assistant

Psychologist posts in both private healthcare

and the NHS. Away from work Lucy enjoys

hitting the gym and spending time with her

family and friends. She tries her hand at

creative baking when time allows but is not

quite 'British Bake Off' standard yet - but the

fun is in the practice!

1. Who are you and what do you do?

My name is Lucy Young and my job title is

Dementia Care Advisor. This title vaguely

outlines what I do, however it is a lot more than

just giving advice! I work in a service called

REACT (Response Enhanced Assessment

Crisis and Treatment). I work with people with

dementia and families when they are termed to

be in a ‘crisis’. This can range from direct

therapeutic interventions with those who have

a diagnosis of dementia, therapeutic work with

main carer and/or family, psychoeducation,

signposting for other services, advice or help

on approaches and overall support with what

people need. I also work closely with families

in highly stressed situations.

2. Can you describe a typical day?

No, I can’t sorry. Due to the nature of REACT

every day is very different. Some days I can

walk into the office and it is non-stop. We can

take up to any number of referrals in a day,

where I also carry out first assessments with

people with dementia. Sometimes the phone

will not stop ringing and we have a number of

visits to do, so some days are very busy to say

the least. However, there are other days when

I have more planned work and this time is

protected when I am work intensely with

families or people with dementia. This is

always related to specific needs.

3. How is your role unique from other

members of your team?

My role is unique in that there is only one of

me within the REACT team, but also the

Dementia care advisor roles have only existed

for 2 years. I do not like to describe my role

as unique, but more that my skills and

approach are different to that of other team

members. I value and respect that every

person’s role is important in a crisis service (as

they are in other services). However, working

About Me


as a Dementia care advisor in a crisis team

often means that the family are also

experiencing high levels of stress and often

this means they are seeking quick solutions. A

lot of work can be about building a relationship

with the person with dementia and/or the family

in highly tense environments so that I may

work with them to possibly help find some

solutions. This is not always easy as you can

imagine, when people are stressed they are

not always willing or able to engage. My role

also varies in my therapeutic approach (having

a psychology background). Also my work and

individual interventions will continue even after

REACT discharge. I work with people beyond

the crisis to ensure that they have the support

and skills to deal with similar future situations,

or sometimes people are ready to accept help

once the crisis has passed. Unfortunately it is

difficult to explain my role in a succinct manner

as every person/family I work with are very

different and no two cases are the same. But

ultimately I assist, support, advise, care,

signpost, counsel, offer help in response to the

situation to those people with dementia and/or

their family or support network.

4. What do you enjoy most about your

role?

The biggest part of my role that I enjoy is the

people. Working with the older generation -

they offer so much history and take you on a

journey of what their lives have been. Their

reminiscence is something I could sit and do all

day. Their lives have been very different to the

existence of today’s world and I find them

fascinating!

I also enjoy meeting new people and some

really lovely families that despite their struggles

are always so grateful for any help. A lot

people we meet in REACT are unaware that

there are services that can offer such a high

level of support. To help these people through

a crisis and find a more settled way of life is

extremely rewarding.

5. What are the greatest challenges in your

role?

Meeting people who are in desperate need of

help or some kind of support but refuse to

engage with it. Especially carers, trying to

engage family members in seeking their own

support can be a huge challenge at times. But

when you finally help to alter that view, it is a

great feeling.

Another challenge in my role is walking into a

situation that is highly stressed and complex

and working out where is the best place to

start. At times my role is about balancing what

is needed and what is timely for the person

with dementia and the family. It’s all about

judging the right time and the right intervention,

easier said than done!

6. How would you like to see your role

developing in the future?

I hope to develop psychoeducational sessions

in the near future, to offer to carers that are in

crisis. This would be a rolling group that

people could attend at any time. I feel this


would be a light introduction to invite people to

a support group and help people understand

what they are about and hopefully to reduce

the fear of the unknown.

Further in the future I would like to think more

about how crisis affects younger family

members, particularly in younger onset

dementia. At this time I feel there is a lack of

support available for younger family members

and how dementia impacts their lives, what

their understanding of it is, whether this be

Mum, Dad, Grandmother or Granddad.

However this is more of a personal

professional interest at this time, but something

that my role definitely has to consider - it’s not

just the person with dementia, it is everyone

around them, too.


Book Reviews

Palliatice Care, Ageing

and Spirituality – A

Guide for Older

People, Carers and Families

Author: Elizabeth MacKinlay

Publisher: Jessica Kingsley Publishers

ISBN: 978 1 84905 290 0

Price: £12.99

Perhaps in an attempt to

appeal to as wide an

audience as possible,

this book states that it is

“written especially for

older people who are

facing death” (Pp. 12). I

found this disorientating

initially, as the language

and tone of the writing seems to have

professional carers or clinicians in mind,

adopting as it does a third person perspective

for much of the book. For me this seemed to

act as a barrier when re-reading certain

sections from a patient or family perspective.

Indeed, I believe that in some respects this

book may be inappropriate for dying people

themselves, as it contains at times, strong

assumptions of what a good death looks like –

particularly in terms of healing past

relationships and the roles of forgiveness and

prayer. Although it may be useful to have a

sense of what a 'good' death might look like,

this may give the dying person (or perhaps

most pointedly their relative) reading this book

the impression that there are ‘things to be

done’ before dying, and so potentially adding

to demands on them at this difficult time.

Similarly, the idea that a dying person might

‘hold onto life’ equally exposes a certain view

of the dying process that fails to acknowledge

that we are not in full control of our dying.

Once I realised this small book works best for

a trainee clinical/pastoral audience, I felt more

able to enjoy it and appreciate the anecdotes

and important points the author was drawing

together. For example, the author emphasises

the importance of understanding that there is

no ‘right way’ to grieve and the fact that death

marks ‘the end of a life but not of relationship.’

Chapters on ‘ethical and moral issues in dying’,

‘intimacy in dying’ and ‘dementia in dying’ are

written with sensitivity and insight and more

practical information on ‘signs that death may

be near’ is useful for an audience new to

palliative care. The sections entitled

“summaries” were also a useful addition in

directing the reader to main points in each

chapter.

Rather disappointingly at times important

themes were alluded to in the book but not

explored to a level of depth that might have

been given more insight to professionals as to

the ‘greyness’ of concepts in this important

field. The complexity of some of these ideas,

such as the protective nature of denial, the

Book Reviews


phenomenon of collusion and the lack of clarity

when it comes to identifying the dying phase

were identified but under-explored. For

example, the role of denial was not fully

acknowledged as a response to suffering not

requiring intervention, as not everyone has the

capacity or resources to turn towards their

suffering. Such an analysis of these ‘grey

places’ would have allowed this book to be of

tremendous value to professional

carers/families. As it is, Palliative Care, Ageing

and Spirituality – a guide for older people,

carers and families works best I feel as an

introductory text for health professionals

considering a move to hospice or palliative

care and may be of particular interest for those

training in pastoral care.

David Shannon

Counselling Psychologist

Bangor University

The Pool activity level (PAL) Instrument for

Occupational Profiling 4th edition by Jackie

Pool. Jessica Kinglsey publishers

Author: Jackie Pool

Publisher: Jessica

Kingsley Publishers

ISBN: 978 1 84905

221 4

Price: £25.00

The UK has an ageing population. With this

trend set to continue (Cracknel 2010) it is vital

that resources designed to maximise

independence and engagement in activity

amongst the older population continue to be

recognised. The Pool Activity Instrument for

Occupational Profiling, written by Jackie Pool,

is an exemplary resource that provides a

‘practical resource for carers of people with

cognitive impairment’. It has been widely used

in many settings, both hospital and community

based.

The purpose of this book is to provide a

method to promote occupation and activity

among people with a range of cognitive

impairments. Pool identifies four levels of

cognitive impairment– Planned, Exploratory,

Sensory and Reflex and firmly advocates that

meaningful activity and participation in

activities of daily living are not only vital but

can be achieved at each stage of a dementia.

Its target audience are any carers and

professionals involved in the care of people

with a cognitive impairment.

The PAL instrument provides clear instructions

to engage people in activity and provides

examples of activities in daily living. It allows

carers to build up an activity level profile of

each persons’ abilities, likes /dislikes and

provides examples on how to engage and

grade an activity for a person functioning at

each of the four stages. This edition also


contains additional case studies which are

particularly useful to assist with applying these

in a practical everyday way. The activities

suggested in page 12 provide a useful “starter

pack” for first time users of the activity levels.

The instrument is not only well respected

amongst healthcare professionals, it is

endorsed in the National Institute for Health

and Clinical Excellence Clinical Guideline for

Dementia as a therapeutic intervention to

identify and individualize performance with

activities of daily living (Nice, 2006).

This edition has made several changes

according to user feedback, and includes a

new chapter on ‘planning and implementing

sensory interventions’ by Dr Leslie Collier of

Southampton University. This addition adds a

new focus to the sensory level of functioning

and provides valuable insight into the

importance of sensory stimulation and the

impacts of sensory deprivation within

dementia, while examining how to overcome

these challenges within activity.

Whilst the idea of a person centred approach is

valuable certainly within community settings,

the use of this tool should be investigated

within acute and community hospitals which

are often overwhelming for patients with

dementia (Heath & Sturdy 2010). To use a tool

to advocate activity would be beneficial. The

use of the PAL should be researched in the

context of relatives of patients in hospitals to

ensure a person centred approach to care is

maintained.

Overall, the Pool activity instrument for

Occupational profiling appears to be gaining in

strength, direction and increasing its evidence

base. Its use, ability and practical applications

continue to grow and when used effectively

promotes occupation in an effective person

centred way.

Katie Glare

Occupational Therapist

Royal Berkshire Hospital

References

Cracknel, R. (2010). The ageing population.

London. Available from:

http://www.parliament.uk/documents/commons

/lib/research/key_issues/Key%20Issues%20Th

e%20ageing%20population2007.pdf[

Accessed 17/3/2013]

Heath H, Sturdy D ( 2010) Improving quality of

care for people with Dementia in general

hospitals. RCN Publishing company.

Middlesex. Available from

http://ihsc.worc.ac.uk/dementia/key%20docum

ents/Health%20and%20Social%20Care/Deme

ntia%20care_EN_1.pdf [ Accessed 18/3/2013]

National Institute for Health and Clinical

Excellence (2006) London: National Institute

for Clinical Health and Excellence. Available

from

http://www.parliament.uk/documents/commons/lib/research/key_issues/Key%20Issues%20The%20ageing%20population2007.pdf



http://ihsc.worc.ac.uk/dementia/key%20documents/Health%20and%20Social%20Care/Dementia%20care_EN_1.pdf




http://www.nice.org.uk/nicemedia/pdf/CG42De

mentiafinal.pdf. [Accessed 17/3/2013]

Finding Meaning in the Experience of

Dementia. The Place of Spiritual

Reminiscence Work.

Author: Elizabeth MacKinley & Corinne Trevitt

Publisher: Jessica Kingsley

ISBN: 978 1 84905 248 1

Price: £22.52

The challenge to find

meaning in the face of

illness and suffering has

occupied the efforts of

philosophers for

millennia. However, it is

also the very personal

challenge faced by

those living with the

effects of dementia, as well as for their families

and those who care for them.

In this book MacKinley and Trevitt invite us to

recognise that despite the negative impact of

dementia, there is always the possibility for

spiritual growth and discovery and that spiritual

reminiscence offers a means of supporting and

facilitating this quest for meaning.

Drawing on ten years of work and research in

this field they firstly set out the underlying

principles of this form of intervention. As we all

know, reminiscing on personal life events

enables the dementia sufferer to cling on to

their sense of identity and connectedness as

they resist the encroaching effects of their

condition. However, MacKinley and Trevitt

propose that it is not the reminiscence of facts

which is of primary importance, but the

underlying sense of meaning associated with

those life events and relationships. It is that

underlying stream of meaning which actually

offers the individual the spiritual resources to

give meaning to the present and to have hope

for their future.

Secondly, they deal with the areas of human

nature which encapsulate the spiritual

dimension of a person’s life – ethics,

transcendence, wisdom, humour, hope and

love. They also give first hand evidence of how

issues of dying and death can be faced by

drawing on the individual’s own sense of

meaning.

Finally, they give very practical suggestions as

to how to run either short or long running

structured programmes of spiritual

reminiscence for groups of dementia sufferers.

This book is not a heavy philosophical

exploration of meaning, but a practical

reflection on years of supporting dementia

sufferers. It draws heavily on first hand

encounters and much of it is dedicated to

airing the voices of those who participated in

the authors’ programme. It offers practical

http://www.nice.org.uk/nicemedia/pdf/CG42Dementiafinal.pdf

http://www.nice.org.uk/nicemedia/pdf/CG42Dementiafinal.pdf


advice to those wishing to use spiritual

reminiscence as a means of supporting

sufferers, but is also a valuable resource for

those seeking references for further research

into this developing area of care.

The book shows that spiritual reminiscence for

those beginning the frightening journey into a

future shaped by dementia is a valuable tool in

helping them come to terms with their fears,

their future and questions of meaning.

However, the work fails to address how to

support the spiritual needs of those with more

advanced cognitive impairment and very

limited communication skills.

The main positive impact of this book on

reading it was the reminder that dementia

sufferers may loose much of their functioning

abilities, but never their humanity and that the

search for meaning in life is far too important a

topic to be left to philosophers.

Rev Peter Davies

Hospital Chaplain

Cardiff and the Vale University Health Board


In this section we review new products and

ideas which may be of relevance to people

with dementia or those working and caring for

them. Please note that we not specifically

endorse any product and aim to provide

neutral information.

BibblePlus is

a UK based

company

which

produces

dignified bibs

specifically

designed for

adults. With the appearance of a bandana, the

bibs are discreet and available in a wide range

of colours and patterns, including checks,

union jacks and stars.

The Bibbles are handmade in Nottingham from

cotton and fleece. They aim to protect clothes

and absorb dribble, while looking like an

attractive and functional piece of clothing.

There are three sizes available, with prices

ranging from £4 - £5.

www.bibbleplus.co.uk

Wales’s Commissioner

for Older People, Sarah

Rochira, is conducting a

review into residents’

perceptions of 100 care

homes.

The aim of the Residential Care Review is to

investigate quality of life and care from the

perspective of those who use them, as well as

friends and relatives.

The review will provide a basis for

recommendations to public bodies and

providers of care.

www.olderpeoplewales.com

A survey into home care visits reports

widespread disadvantage to older people

following cuts reducing their duration.

The study, conducted by The Guardian and the

Department of Health, received 1,440

responses across England. Seventy-three

percent of people indicated lack of time during

visits as the greatest obstacle to quality care.

Opportunistically, the contact itself appears to

be positive, with only 15% reporting negative

experiences of staff. However, with two thirds

of councils commissioning 15 minute visits,

quantity is compromising quality.

Staff pay and training were additionally

highlighted as an issue

Did You Know... News and Web

http://www.bibbleplus.co.uk/

http://www.olderpeoplewales.com/


By the end of the current financial year, £2.7

billion will have been cut from the adult social

care budget across English councils over the

past three years.

www.theguardian.com/society/2013/oct/30/ho

mecare-cuts-home-visits-older-disabled-people

Lloyds Banking Group has worked

alongside the Alzheimer’s Society to

develop a charter for people with dementia.

Supported by the British Banker’s Association,

the charter aims to enable people with

dementia to continue looking after their own

finances.

The Dementia-Friendly Financial Services

Charter is part of the Alzheimer’s Society

Dementia Friendly Communities programme.

www.alzheimers.org.uk/site/scripts/documents.

php?categoryID=200436

The following websites provide further

information on topics featured in several of

this issue’s articles:

Neuroimaging

Contribute to brain research by playing games

– the Wellcome Trust Centre for Neuroimaging

has developed a mobile phone app to test

memory, impulsivity, attention and decision

making: www.thegreatbrainexperiment.com

The Alzheimer’s Society’s website gives details

on getting involved with research, including

studies involving neuroimaging:

www.alzheimers.org.uk/site/scripts/documents.

php?categoryID=200425

Mindfulness

www.getselfhelp.co.uk/mindfulness provides

information of mindfulness including free

scripts, exercises and mp3 downloads.

The Mental Helath Foundation are conducting

a campaign to raise awareness about

mindfulness. Find out more at

www.bemindful.co.uk

http://www.theguardian.com/society/2013/oct/30/homecare-cuts-home-visits-older-disabled-people

http://www.theguardian.com/society/2013/oct/30/homecare-cuts-home-visits-older-disabled-people

http://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200436


http://www.thegreatbrainexperiment.com/



http://www.getselfhelp.co.uk/mindfulness

http://www.bemindful.co.uk/


Anyone Can Contribute to Signpost

Including those who care for older people with

mental health needs in hospital, residential

homes and in the community.

Contributions

All contributions must demonstrate a positive

attitude towards this group of people and their

carers. Contributions can be made in the form

of an article, care study, letter, question,

announcement, review or other appropriate

proposal.

Contact Details

Practice Development Unit, MHSOP,

Llandough Hospital, Penarth, CF64 2XX.

Tel: 02920 715787

Email: [email protected] or

[email protected]

i Heath Care Professionals Council – www.hpc-uk.org

ii British Association of Music Therapy website –

www.bamt.co.uk

iii

BBC documentary (2008); Oliver Sacks: Tales of Music and

the Brain –


iv Henry: You Tube clip –

www.youtube.com/watch%3Fv%3DFw7Y78aqf_I

Singing for the Brain : Alzheimer’s Society -

www.alzheimers.org.uk

Dementia Services Development Programme,

Stirling - http://www.dementia.stir.ac.uk/creativity

Taken from Daffodil Cymru: Dementia estimates

for Wales (2013) - www.daffodilcymru.org.uk

To view examples music therapy research, see the

Evidence bank - www.nordoff-robbins.org.uk

Information About Signpost

Signposts Editorial Panel

Dr Simon O’Donovan is Clinical Director for Mental Health Services for Older People in Cardiff and the Vale of

Glamorgan and leads the Younger Onset Dementia Service.

Dr Christina Maciejewski is a Consultant Clinical Psychologist working within Mental Health Services for Older People

in Cardiff and the Vale of Glamorgan.

Chris Sampson is a Head Occupational Therapist working within Mental Health Services for Older People in Cardiff

and the Vale of Glamorgan.

Paul Bickerstaff is a Lecturer in Mental Health, Learning Disabilities and Psychosocial Care at the Cardiff School of

Nursing and Midwifery Studies.

Kim Sweet is an Advanced Nurse Practitioner working within Mental Health Services for Older People in Cardiff and the

Vale of Glamorgan.

Johannes Gramich is a social worker working within Mental Health Services for Older People in Cardiff.

Dr Natalie Elliot is a Senior Specialist Speech and Language Therapist with the Cardiff Memory Team and Mental

Health Services for Older People in Cardiff and the Vale of Glamorgan.

Dr Rachel Brewer is a Specialty Doctor with the Cardiff Memory Team.

Rosalind Cooper and Emma-Marie Williams are Assistant Psychologists working within Mental Health Services for

Older People in Cardiff and the Vale of Glamorgan.

Books Available for Review:

Comforting Touch in Dementia and End of Life Care. Barbara Goldschmidt and Niamh van Meines,

2012.

How we treat the sick. Michael Mandelstam, 2011.

Puppetry in Dementia Care. Karrie Marshall, 2013.

mailto:[email protected]

mailto:[email protected]


http://www.alzheimers.org.uk/


http://www.daffodilcymru.org.uk/


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